Saturday, August 29, 2009

We leave today for San Francisco. I'll be admitted to the 11th floor of the medical center on Sunday. The super chemo treatment will probably happen on Monday. That treatment will be about 17 minutes of whammo!I would like to maintain contact with you. You are welcome to call my cell phone, but the hospital asks that we not have long conversations on cell phones. I'll get my bedside phone number when I am admitted. My address is: Susan Harper, Patient; 11Long; 505 Parnassus Ave.; San Francisco, CA 94513.I feel like I'm packing to head off to college or some other great adventure. On the other hand, I know it's not all going to be light hearted fun, so I do have some apprehensions and dread. I know I am in good hands.

On Thursday, my Bass Lake quilting friends (all but Ruth who is in San Diego), brought breakfast over. A nice bon voyage breakfast. I was encouraged to open a large gift bag and pulled out a beautiful blue and white quilt! 21 of my friends had been working on this quilt over the summer. I did hear whispering of "sewing kits" going around but had no idea it was about a beautiful quilt for me! It will look beautiful on my bed at UCSF. As Dotty said, "the love of God and my friends will wrap me in warmth like a quilt."Friday, the postman brought a box to my door. It had my cousin's, (minister Bruce) address on the return. Inside was a lovely hand knit shawl. The shawl was dedicated during the worship service at the Lakeville (Mass) United Church of Christ. The hang tag read, "may it enfold you in our love and prayers." I can imagine times when sitting up in bed that I will want something across my shoulders. I will think of the kind people in Massachusetts who prayed over the shawl continue to pray for me.

Another group project that has been very encouraging is my Aunt Betty's church, Rockland Community Church, in Golden, Colorado. Every week I receive a couple of cards from their card sending ministry. I love getting kind words through the mail. This group's dedication is impressive. I'm glad to know they're praying for me.

Thank you to everyone who thinks of me. I am amazed when I run into people who say they have been praying for me every day. I have never before experienced this kind of attention. I know that God has lessons about prayer and dedication here for me.

Wednesday, August 26, 2009

As written/transcribed by Jessica, any misplaced or lack of commas are that of the typist:No change in the blood clot. I received a 7 day supply of blood thinning shots which makes tomorrow the halfway point. I'm hoping for some change or progress by then.I've had time to finish a Pulitzer award winning book, borrowed from Maggie, called Middlesexby Jeffrey Eugenides. Out of five, I give the book a 4, because you had to invest a lot of time into it. In other words, not a light read.I'm also taking some more time to enjoy the devotional Praying Through Cancer. The two page devotions are a nice break from the heavy read.Our current prayer requests are for the clot to go away safely and that we can register at UCSF on Sunday as scheduled.

Monday, August 24, 2009

Update from Jess:The last couple days Mom's neck has been hurting, very tender to the touch and hurts to swallow. Today she got in touch with Bridget at UCSF and Bridget ordered an ultra sound to see what was going on. Results were sent to Dr Garley and Bridget and they agreed that it was a blood clot. Mom was injected with blood thinner and sent home for bedrest with limited neck movement. Prayer requests: Please pray that the clot goes away in a timely fashion and doesnt affect the Sunday August 30 hospital admit date.

We heard from Bridget, the stem cell transplant coordinator nurse, that she would try to get me into UCSF Hospital on Sunday, August 30. I am a little anxious that I stay healthy until then. The area of my neck where the catheter for stem cell harvesting was inserted is now painful. It hurts when I swallow or turn my neck. I hope it is normal bruising, and not signs of infection or bleeding. The other thing driving me crazy is the neuropathy in my legs. I have to remind myself to increase my pain meds. So please pray regarding these three specific things: stay healthy until I get admitted, neck pain, and neuropathy.

There has been a change in the teaching plan for my room of fifth graders. The district’s financial decisions required that we drop a third grade class. That teacher, Patti Moore, will be teaching in Room 14 all year. I thought Stephanie was going to be a great long term sub, however, having Miss. Moore as the consistent fifth grade teacher all year is even better. When I return in January, I will be a push-in teacher (helping in several classes), which gives me a great deal of flexibility. One thing that never changes is change itself!

Wednesday, August 19, 2009

George and I drove home from San Francisco today (Wednesday). Now that we're home I can tell that we are "decompressing" from a big event. Even though everything turned out really well at UCSF, it was still stressful. I'm sure we'll be back to our normal selves tomorrow.

Tuesday started early for us. We walked to UCSF from our hotel at 7AM. Instructions for my dialysis said to eat a hearty breakfast, so that's what I got at one of the many hospital food venues. We reported to the busy dialysis room, I got hooked up, and there I laid, not moving, for 4-1/2 hours! (For more details and photos, check out George's bolg. The link is in my side bar.) When that was over, the catheter in my neck was bandaged again, complete with bright orange label!

We walked across the street to meet with Bridget, the scheduling nurse. We talked about our return trip the end of August. Because I am such a "healthy" myeloma patient, I have low priority for getting scheduled into the hospital. Bridget wanted several options for admit days so that she would have flexibility in getting me in. Bridget had other really good news. My first draw of blood contained more than enough stem cells for two transplants (they collect for another transplant years from now). That means I only had one day of dialysis. It wasn't a bad experience, but I wouldn't want to repeat it if I don't have to! It also meant that my catheter was removed, along with the bright orange label.

George and I celebrated the good day by dining at a nice Italian restaurant. We talked and "reviewed" all the good results and experiences we've had. Again we gave credit to our huge prayer base. With so many people supporting me I feel buoyed up. That positive feeling shows, and I thank my friends and family for giving me that feeling.

Monday, August 17, 2009

Here we are in San Francisco. Last night we took public transportation from breakers to bay. We were proud of ourselves for figuring it out. This morning I gave blood for blood tests. The good news is that I have a lot of white blood cells. I find out at 4:00 if those white blood cells are stem cells.Next, we went across the street to the hospital for my catheter in my neck. The doctor used a local anesthetic, so I could hear and feel tugging and squeeking as the tubes were inserted into my veins. Others who have gone through this before me had two catheters, one on each side, thus the Frankenstein look. I just have one opening on my right side that branches off to two different "hoses." The scarf advice was good as the bandaging covers a large area. If that wasn't bad enough,the doctor slapped a flourescent label on it!

We decided to check out the amenities of the hospital since George and I will soon be spending three weeks here. The cafeteria serves a wide variety of pretty good food. Then we checked out 11Long (my floor for the transplant). We found the family lounge. It has games, puzzles, books, vhs movies & tv, and computers. I am working on one of the computers right now- very convenient.Our hotel, The Carl, is close and economical. Our room, however, is quite small. George and I can't both be moving around at the same time or we will collide. We are finding other places we can "hang out" so we don't go crazy in the cramped room. We are pretty much exploring. I brought books and hand sewing (Grandmother's Flower Garden quilt), George brought books and is studying Spanish. We're content anywhere there is coffee and tea and quiet. When we're done for the day, it's back to The Carl. We're on the third floor, facing the street. The three car electric train goes by at regular intervals and has a stop right in front of our room - noisy. I'm glad I brought my ear plugs.We are on an adventure. It's new. We're learning a lot. The people are very friendly. Sounds like a vacation - Wish you were here! It probably feels like that because so many people are sending in their prayers. Keep it up! I love you!

Saturday, August 15, 2009

Tomorrow George & I are heading up to San Francisco again. We want to be ready to start the Stem Cell Collection process bright and early Monday morning. On Monday they measure the count of stem cells in my blood. If there are not enough, they will give me a "booster" shot to get my bone marrow producing! Also on Monday they "install" the catheter tubes on either side of my neck. One bit of advice I got from another Stem Cell Transplant (SCT) patient was to wear a scarf around my neck because I'll look a bit like Frankenstein!Then on the next days, my blood will be drawn out (not all at once), centrifuged, the stem cells removed, and the rest of the blood put back into my body. It could take one day, or as many as four days. Usually it takes two days. They take enough stem cells for two transplants and keep them frozen until I need them again.I hope to be back in town by Thursday or Friday. I have a few specific prayer items. George is missing a lot of work. We are thankful that Valerie works at the office, but it is hard when he is absent. My neuropathy has become quite painful. I should recover from this side-effect, but I hope it is sooner rather than later! A big thank you to all of you who are praying - you are so encouraging to me.

Friday, August 14, 2009

This week is the week between the big meeting in San Francisco and stem cell collection. It’s been very busy because there is a lot I want to do before we go to UCSF. I visited my classroom at school. I was pleased to see that some anonymous friends at Pinedale had papered the bulletin boards in my room. That was a generous gift as papering is a tedious job. I thank those mystery friends. I’ve also met with the teacher, Mrs. Benight, who will have my class the first semester of the school year. We’ve met a couple of times to go over curriculum and class/school procedures. Perhaps the bigger job right now, is getting the room set up. At the end of the year everything had to be boxed up to be moved out of my room. Everything was moved out for asbestos removal and installation of new carpet. The furniture and boxes have returned to the middle of the room! Teacher friends have helped Mrs. Benight figure out where some things go. I worked with her on some of the boxes and what goes where in the shelves. When I called her this afternoon, she sounded quite cheery, so the job hasn’t overwhelmed her yet! It looks like my class will be in good hands.

I’ve had the opportunity to talk with two women who have had stem cell transplants at UCSF. Doctors and nurses can describe the procedure, but it’s not like talking to someone who has actually done it. The Leukemia/Lymphoma Society gave my phone number to a woman who was very encouraging. We spoke for quite a while and she was very pleased with the outcome of her transplant. Karen brought a friend to my house to meet me. This friend had a stem cell transplant at 11Long, UCSF. She brought her photo album (plug for Creative Memories) which chronicled her stay. It was neat to see pictures of where I’ll be staying. This woman, too, is enjoying a full life after the transplant.

Again this week, friends have pitched in to drive me places. You would not want me on the road right now. I had a very pleasant Wednesday morning when Jenny came over to remove the brown flowers from my zinnias and roses. I am so thankful for everyone’s support. It’s hard to be on the needy side of things, but I am meeting and getting to know better so many fabulous people. You are a blessing to me and part of God’s plan for me. Thank you.

Wednesday, August 5, 2009

Today was a long day, much of it spent on the road. We had a bit of traffic on our way to San Francisco, but checked in at the UCSF medical center at 10:03. The 10:00 appointment was drawing blood and other basics. Our 11:00 meeting was with Doctor Wolf and Nurse Bridget Mazzini. We talked about the upcoming stem cell transplant and its risks and benefits. Dr. Wolf told me that based on last week’s tests, my myeloma is in “complete remission.” Yahoo! That’s good news! Now, we have to remember that I won’t be cured, the myeloma isn’t gone, just that the various indicators are within acceptable ranges. It also means that I’m in great condition for the stem cell transplant.We set up some tentative dates for medical work at UCSF: Stem cell collection August 16-20, Chemo and transplant September 1- 21. These dates could change. I will need help at home when I return from UCSF after September 21.I believe that God has carried me through this cancer adventure. God has certainly blessed me with fabulous family and friends. Thank you to everyone who has prayed for and helped me so faithfully since May. Thanks to my friends and family, I feel very well taken care of. We’re at the half-way point, and I hope you’re staying with me!

Tuesday, August 4, 2009

Tomorrow, bright and early, we start our journey to San Francisco. George and I pick up Cindy, Deb, and Maggie at six o'clock and hope we don't have many traffic jams that slow us down. We have meetings at 10:00, 11:00 and 1:00. I expect that we will be setting up the dates for the various treatments leading up to and including the stem cell transplant. One meeting is with a social worker to discuss at home care following the hospital time (3 weeks). That's why we have Cindy, Deb, and Maggie with us. I couldn't just tell the social worker that I have lots of friends looking after me, I had to bring them with me! These faithful friends are giving up a full day to meet with the social worker for me. That's friendship! Please pray that all goes well- from travelling to setting up dates.

Saturday, August 1, 2009

Fun Friday happens at school when you’ve done all your work throughout the week and you get to do the fun activity on Friday. Well, we worked hard all week. We repeated every test I had already taken plus a few extra. The final test was the bone marrow biopsy at Dr. Garley’s office. I’m getting pretty good at this. Thanks to all the people who transported me to my appointments. Patti and I did a “marathon run” on Wednesday, starting at 6:50 through 12:30. We deserved a nice lunch. On Friday all the tests were done, so I just did lunch! I don’t know any results. The results will all be sent to Dr. Wolf in San Francisco. We will see him this Wednesday, the 5th. After that visit, I’ll have more dates to share.

April 30. 2009 I was diagnosed with Multiple Myeloma. This blog is to keep my friends and family updated. If you have comments, advice or even questions feel free to comment! Comments have been enabled even for people who aren’t BlogSpot members. Just choose the anonymous option!